Illinois Department of Human Services
Division of Developmental Disabilities
Information Bulletin
DD.24.008
Purpose:
This Information Bulletin (IB) outlines the HCBS Settings requirement that providers must ensure that all individuals receiving Home and Community Based Services (HCBS) waiver-funded services have the right to control their personal resources. This includes individuals receiving services in individually controlled Community Integrated Living Arrangements (CILAs), provider owned/controlled CILAs, Child Group Homes (CGHs) (this applies only to those living in CGHs who are 18 or older; for those under 18, CGHs are encourage to education and training on the issue) Community Living Facilities 16 bed or less (CLFs), Community Day Services (CDS), and through the Home-Based Services (HBS) program. For more information generally about individual funds management, refer to the information bulletin Individual Funds Management at IDHS: Individual Funds Management (state.il.us).
Background:
The Centers for Medicare and Medicaid Services (CMS) has specific rights that must be afforded individuals receiving services funded by the HCBS waiver, regardless of the setting type. Among those rights is the expectation that waiver participants are assured the right to control their personal resources.
Details of the HCBS Settings Rule requirements may be reviewed at 42 CFR §441.301(c)(4)(i-v) and include:
1c) Providers ensure an individual's right to control personal resources.
Policy:
Right to Control Personal Resources
Individuals have the right to control their personal resources, such as cash, savings/checking accounts and SNAP benefits, unless there is a clearly identified and documented safety concern. In such cases, the safety concern must be based on individually assessed needs and documented in the Personal Plan and Implementation Strategy, as indicated in the Modification section of this IB. If the provider is also the individual's representative payee, this is considered a Modification and the representative payee must ensure it is meeting the Social Security Administration's (SSA) rules and responsibilities for representative payees as detailed in the Guide for Organizational Representative Payees. See Social Security - Guide for Organizational Representative Payees - Table of Contents (ssa.gov) A parent/guardian's concern that an individual does not have the ability to control their own resources does not constitute an assessed need. Guardians should assist individuals in managing their personal resources if they need assistance. When individuals need assistance, guardians will first use "Substituted-Judgment". Substituted Judgment requires that when the individual can express preferences, the guardian should act in conformity with those preferences unless it is clear that substantial harm would result to the individual. If an individual is unable to express preferences, then the guardian will make decisions in the "best interests" of the individual. Further detail is provided in this factsheet created by the Guardianship and Advocacy Commission: HCBS Setting Requirements and Guardianship (illinois.gov) PDF.
All providers must have a policy affirmatively stating that individuals shall be afforded the right to control their personal resources and staff must be trained on the policy.
Implementation:
People have the right to control their own personal resources. Providers should discuss this with individuals when they first begin services, at least annually during the Person-Centered Planning process and any other time the situation warrants a discussion. For example, a change in employment status of an individual might warrant a conversation about personal resources. Providers should work to understand an individual's interest in and current ability to control their personal resources. This can be done through conversation (in which case the conversation should be documented somewhere such that it can be produced should a regulatory agency request it) or assessment. The discussion or assessment could include but is not limited to education about individual rights to control personal resources, a discussion about how individuals want to control their resources and written or pictorial questions about interests in training and support towards greater independence in controlling personal resources. The provider should then work with the individual to provide the level of support and way they want to control their resources and help where needed to support the individual in education to expand their understanding and abilities around finances.
If an individual indicates a desire to control their personal resources, they should be afforded the opportunity to open a bank account that they control through a debit card or other means. Other means can include an individual who wants to keep their money on hand and can control that many, with varying levels of support. Any restriction on their access to personal resources is considered a Modification which must be based on individually assessed needs and documented in the Personal Plan and Implementation Strategy as indicated in the Modification section of this IB.
When an organization is a representative payee, any bank account opened for that individual where the payee helps manage those funds must be a fiduciary bank account properly titled to show the beneficiary owns the funds in the account and the payee holds the fiduciary interest. Further, the beneficiary cannot have direct access to the account. If any issues or conflicts arise between the guardian and the rep payee if they are separate, they should involve the ISC case manager. If resolution does not take place, the ISC can involve DDD staff for support.
Absent a modification, individuals should not have to ask staff for access to their money and providers may not "pool" several individuals' resources into a collective account for social security benefits unless the provider is the rep payee for individuals and the account has been approved by SSA prior to use. The provider must be able to track and show each person their bank resources at any time.
For individuals who express a desire to control their own resources but need assistance in doing so, providers should work with individuals to support them in safely managing their resources. This could include staff assistance in accessing their funds, such as helping at an ATM, or accompanying them to the bank to make a withdrawal, until the individual feels ready to manage their resources on their own. In this case, the provider should document that the individual has expressed a desire to manage their resources, has asked for assistance in learning how to, and progress the individual is making toward their goal. Individualized training focused on the areas identified by an individual is encouraged.
Not all individuals will choose to manage their own personal resources. It should be documented in the Personal Plan if an individual does not want to manage their own personal resources. There will also be individuals who are unable to manage their own personal resources due to an identified safety concern. In both cases, when a provider is controlling an individual's financial resources, it is required for the provider to develop an internal tracking system to assure accountability of the individual's resources and to prevent theft. An accounting of their funds should be shared with the individual in a way they understand as well as their guardian monthly (or less frequently if the individual/guardian indicates a monthly accounting is unnecessary) as well as anytime the individual and/or the guardian requests it.
Providers must develop procedures that allow an individual to quickly access their resources. For purposes of this Settings expectation, quickly is defined as no more than 24 hours from the time of the request. For instance, if an individual wants to go out for dinner on Wednesday but needs to access funds to do so, it is not acceptable for the provider to say they will have to wait for the weekend when they can be taken to the bank. The provider is responsible for assuring the individual can access funds when needed. For situations where resources cannot be accessed within 24 hours - for example, an individual chooses not to have a debit card and asks for funds on a Saturday afternoon after the banks have closed - providers must develop a policy to ensure individuals have timely access to both large and small sums of money upon request and should discuss with the individual how to address future requests so they can be accommodated.
As with all other rights under the Settings Rule, the Independent Service Coordination (ISCs) agencies will share the document when an individual initiates services, whether residential or community day services, and annually thereafter, and require a signature from the person and/or guardian. Providers also should share the IDHS: Right of Individuals Form, IL462-1201.pdf (state.il.us) document and review it with individuals whom they support, as well as staff, at least annually. Guardians should also be provided a copy of the rights document. Providers are welcome to develop and share additional information with individuals as well.
Modification of the Right to Control Personal Resources Requirement
- Modifications are considered a deviation from the individual's right to control their personal resources. For example, a person having a representative payee is considered a Modification. A Modification must be supported by a specific, individually assessed need and justified in the Personal Plan. Modifications also must be reviewed by the Human Rights Committee (HRC) or Behavioral Management Committee (BMC) and must comply with the process outlined in Rules 115, Rule 119 and 120. The HRC manual details the process for HRC reviews. The Personal Plan and Implementation Strategy should include the following:
- Specific and individualized assessed need for which the modification is required
- Less restrictive interventions and supports attempted without success prior to imposing any modifications
- Data collection and review of less restrictive interventions and supports. In addition, if the modification is needed due to the presence of behaviors that pose a risk to the individual or others, include collection and review of data related to the effectiveness of methods used to reduce the undesired behavior
- Schedule of periodic reviews of data as outlined in the Behavior Intervention And Treatment Implementation And Billing for a rights restriction.
- Assurance interventions and supports pose no harm to the individual.
- Informed consent of the individual and the individual's guardian, if applicable.
- The prospective, or current provider agency, is responsible for providing items 1-6 above to the ISC agency and documenting these items in the Implementation Strategy. In addition, the Implementation Strategy of all other individuals living in the home must address the specific supports that will be provided to assist them to have control of their personal resources.
Complaints
If an individual, guardian or concerned person does not feel a person is receiving services compliant with the HCBS Settings Rule, they can report the issue to the provider or to the ISC. They can also go through the formal HCBS Settings complaint process by using the web form: IDHS: DHS DD Services Complaints (state.il.us), email: DHS.HCBScomplaints@illinois.gov or phone number: (877) 657-0005.
Effective Date:
This Information Bulletin is effective April 9, 2024
